Jesse, Buxton

Jesse is a 16-year-old quiet, shy young man with a dry sense of humor. He was diagnosed at the age of two with Duchenne Muscular Dystrophy. Jesse is like most other teenagers as far as we are concerned (including Jesse). He will complete 10th grade soon with High Honors which has been achieved due to lots of hard work and determination. He enjoys playing video games (one activity where his disability doesn’t have an influence) as well as going fishing and building detailed model cars. He was also a member of the Bonny Eagle Robotics Team (BERT) which gave him an amazing opportunity to be part of a team and learn how to work together to be successful.

As he approaches adulthood, it seems each corner turned there are new obstacles to overcome. As we enter this phase in his life, he is dealing with the disappointment of not being able to obtain a drivers license (at least not very easily) while all his peers are attending drivers education. Not to mention the dating scene, it is difficult for him to accept that girls may not be interested in him due to his disability and confinement to a wheelchair (cool as his chair may be). His shyness definitely compounds this. Regardless of his disability we are excitedly/cautiously beginning to prepare for his venture into life after High school from college to independent living.

Jesse lost his ability to walk at the age of eleven and uses an electric wheelchair for mobility. His chair is an extension of him so he sports a custom paint scheme every year (usually involves flames of some sort). He has a nine year old sister who is not affected (or a carrier) of D.M.D. He also has his constant, loyal companion, Wini, who has had a major impact in his life. She is his six year old Golden Retriever service dog who he has had for over three years. She has given him increased independence, a sense of security, and unconditional love among other things.

Jesse is followed by a team of doctors locally as well as at Boston Children’s Hospital. His doctors’ range from neurologists, orthopedic specialists to cardiologists and physical therapists, just to name a few, who monitor the progression of his disease and work together to try to maintain or at least slow the effects of the M.D. This is attempted with medications as well as spinal fusion surgery at Boston Children’s in 2008 and hamstring release in 2005.

We, as a family, try not to let Jesse’s disability limit him or us from doing anything that he sets his mind to. We want him to be able to experience most things anybody else his age can. We have taught him that he is no different than any other kid except his muscles do not work quite right and that is how we treat him. With any hope, they will at least develop some sort of treatment to stop the progression of the disease if not a cure but in the meantime we take one day at a time.